Surgery Day

I just want to say I'll see you all on the other side... Thank you!

Stumbling

When you stumble repeatedly on your afternoon walk, and one time a stranger asks "Are you OK?" and you want to say "No, I  have a big honking tumor in the middle of my brain" but you say "Yeah, I'm fine, thanks."

On the plus side, it is a glorious day out there!

Support System - I Am Blessed

For so long - literally several years - I forgot I don't have to go it alone. My cognition deteriorated and I just couldn't figure it out, or sometimes even recognize it. I wandered and wondered and, frankly, did enjoy life to a great extent. But I kept getting worse.

Falling behind.

Thank goodness my family stepped in. I'm watched, loved, cared for, and coped for. I'm getting the help I need. There was something wrong, darn it! I don't know how I missed that.

I am so grateful for my family, and for my sister, Trish, especially, for taking the reins when I had to drop them. I just couldn't hold on any longer. 

I am truly blessed.

Eyes

Wow, my eyesight has really diminished! Darn brain tumor.

After recovery from surgery I think this will be my priority, or one of them. Comprehensive eye tests and new prescriptions. I would love to see clearly again, and I will!

Update

It's been a while...

My surgery is scheduled for March 16, with an appointment next week for prep (I think).

Recovery in the hospital will be a day, probably, with a rehab facility or home after that. Amazing. They're cutting open my brain and operating for about 8 hours, and recovery may be a couple of days or weeks. Unbelievable, really. 

I'm hoping I'm a big enough priority that even if the coronavirus hits this area, they will proceed with my schedule. But that's out of my control.

Life goes on. I am walking a couple of times a day and doing breathing exercises to get my stamina up. My appetite is voracious because I'm on a steroid, but that is temporary and the least of my worries.

I'll try to keep you all updated more regularly, but, you know, I have a brain tumor so I'm pretty foggy these days!

Steroids

I've been eating like crazy for a couple of weeks. Tonight my sister finally put it together. Steroids!

I haven't gained weight yet, maybe because I'm walking daily. But a little weight gain is better than a brain tumor, I guess.

Progress

My surgery is scheduled for March 16, which just happens to be my birthday. A re-birthday this year!

A few other appointments are scheduled before that, as well. I'm on my way...

I do breathing exercises at least 3 times a day, and so far I kind of suck at breathing. Good thing I have a month to practice and build up my stamina.
I had been constipated for about 6 days, but this morning I pooped! It's the little things these days. 😅

After recovery I need an income. I'm thinking a basic  job like dishwasher or hostess or stockroom to start. Nothing to tax the brain. If something desk/phones is available, that could be good, too.

I've contacted a local friend to start building an independent life here. It's on!!!

Soon Off to Another Consult

I'll let you know how that goes!

The Waiting is the Hardest Part

Probably not, but I hope so!

I have a million questions

Will I live?
Did I catch it in time?
Why did it take me so long to deal with it properly?
How much functioning is permanently gone?

How will I live?
How will I make a living?
How will I pay people back?

Am I communicating to the right people in the right way?

Okay, the rest of the million questions will dribble out!

Next appointment

I have an appointment with a neurologist(?)/brain tumor doctor on Friday. Five days from now is comforting -- it makes me think they're not panicking, quite. Good.

Next, some answers and a path forward.

Moving Forward

Now that I've processed a bit, it's clear. All I have to do is beat a brain tumor!

Nutrition
Medication
Brain surgery

Brain Surgery? Well, maybe. But I won't be the first person in my family to have it. I won't be the first person in my family to survive it and thrive.

The five-year survival rate for a non-cancerous brain tumor seems to be about 70% per the Internet; I haven't spoken to anyone familiar with my case, so I don't know that. I'm now almost 59, so that means (to me) I'll probably live into my 60s. Of course, my mom was hearty and the rest of my siblings are relatively healthy, so my odds seem to be good.

What I do know is I better do my living today. Which I should have known anyway!

I have actually had a great life and not had many hardships, so another 5 years of this would be fantastic!

OK...

Well, the MRI indicates a benign brain tumor. I've been put on some steroids to reduce the swelling, and will see a doctor this coming week.

So I don't know anything. The words "tumor" and "benign" kind of cancel each other out or at least go together well, so I'm feeling OK, emotionally. I'm still processing, but OK for now. I guess.

Next step

OK, the brain is being studied. Maybe that will lead a ton of results and the answers I'm looking for.

Next step...

Right now I feel great. My lack of typing ability is driving me crazy, though. So today I'll try to figure that out. I used to type very fast, so what could be effecting that? Let's try to research and see.

.

MRI, part 2

My MRI went well today, but I may not have the results until my doctor's appointment in a couple of weeks. I'll definitely let you know!

Tomorrow I'll try to take another walk around the neighborhood -- but the weather is yucky! We'll see...

MRI

I think I'm losing my mind, because I can't remember if I've had an MRI before. I remember worrying about my toe ring and them telling me it should be no problem, and it wasn't. When the heck was that? I feel like I remember it -- would I have gotten an MRI for dental work? Probably not. No. It wasn't that.

Oh, well, I'm having one tomorrow. I want them to find something obvious so I know what's wrong and can fix it.

What if I can't fix this? I'm working toward getting on the road again anyway. I love my sister and this way of life, but I crave freedom and experiences.

OK, reality check. I can't remember when I had an MRI or why. I am clearly not okay. I don't have any resources, I owe people money, and I have to get well. I hope my MRI gives me some answers and a road map, but it's going to be a long journey, nonetheless. 

Let's go!

Can I Make a Living?

I need to be patient. And I have time. I am living with my sister while I figure things out. I have until the end of the month with free health care so I should get the MRI and take one more step toward health. Then other free health care should kick in. 

I can survive without making a living for several more months.

Then, YES. I can make a living.

There are many people as sick as I am surviving out there. My definition of an income to live on will have to be revised down from most peoples'. Well, maybe.

If I sell my writing and I do really well, maybe not. But probably, it won't be a lot.

There is welfare and disability, and family. But I do think I can make it on my own and really just have to a) figure out how and b) get on my feet with all people paid off.

Whether living on the road or living in one place, I can do it and I have time to figure it out. One less thing I should worry about as I focus on getting better.

Things that make you go "hmmm"

So, I have a couple of questions..

Are the stairs a danger? I have to be very careful when I go up and down the stairs. And that worries me a little/a lot. There is a railing, and I do skip the stairs if I feel unsteady or my hands are full. But still, I'm hyper-aware. Which, I guess, could end up being a good thing. I'll be careful.

An I getting better? My sister has noticed an improvement today in my energy and my clarity of thought. So have I. I hope we're right, and something is working.

Right now I'm having trouble typing and thinking clearly (or as clearly as I want). So, here's a thought. Adapt and take a break. It's almost 5:00, so maybe limiting my high-functioning time is a good coping mechanism. Ta ta!

Today I Feel Great

This morning I feel like I can conquer the world. Like I can get healthy and whole and if not, live a great life anyway for years to come.

I want to keep this feeling.

I know it will take me a while to get back to baseline financially -- make enough to pay everyone back and get a rig and get on the road.  I know it won't be tomorrow. 

I will get healthier and stronger. I feel great.

So, I need to figure out physically what to do to keep that certainty and that energy and that mental clarity. I need to hold onto this feeling. To realize I'm not well yet, but I will be. I'm on my way.

I'll check back in later today to see if I kept the feeling, got more clarity, and/or made progress. But right now I am hopeful and... happy! 

Finances

I am going to pay everyone back, even though that's a few thousand dollars. It's my first priority, and should happen soon, if by soon you mean in the next few months!

Then I will save for a used car or rig -- something that costs a tiny bit. "A tiny bit" fluctuates between $1,000 and $20,000, depending on my mood. Right now I have $20 to my name, so that's a way future thing!

And then, the road! I know my family doesn't want to hear that (and doesn't believe it) bit it's the situation that calls to me.

Right now I can't even support myself, so the (pipe) dream has to wait while I get back on my feet with my health. It will happen! Probably. I have to believe...

The River that Flows Both Ways

There’s a Pete Seeger song about the Hudson River, and it goes a little like this – “I could be happy just spending all day on the river that flows both ways.” I lived along that river for a few years, and I would literally spend hours gazing out my window high above the Hudson  River and dreaming.  I really relate to that song.


The point is, I’ve neve had a normal brain. My mind has always wandered and I’ve always daydreamed more than most people. Bright? I am very, very intelligent. But my mind is strange. Or “and” my mind is strange. Maybe intelligence and weirdness go hand-in-hand. Okay, instead of weirdness I should say creativity and quirkiness. Okay.


Anyway, that dreaminess is not what I’m talking about. Really. Well, but it kind of is. And the inability to concentrate alternating with hyper concentration has been my pattern. These days I don’t seem to have the focus at all, though. I’m not a dreamer, anymore. I’m brain damaged. The difference may be lost on some, but I feel it with a vengeance.


I guess, when I think about it, that means my dreaminess and inability to concentrate are not bad. I mean, I could be happy watching the river all day. It’s the damage that is the problem. 

I’ve long been afraid that fixing myself means losing myself. Now I think I can lose the bad to uncover the great. I hope so.

My Symptoms

Okay, let's list my host of symptoms, in my feeling of their importance. (I'm not a doctor nor do I play one on TV,)

• balance
• dizziness
• brain fog 
• short term memory loss
• urinary incontinence
• cough
• numb fingers and toes
• un-coordination (typing, for example)
• hearing loss
• eating constantly
• no concentration
• high blood pressure (treated)
• high cholesterol (treated)
• high blood sugar (treated)
• depression (treated)
  

All of these have been reported to doctors. I really like my current (new) doctor, and he has referred me me for an MRI to check my head! That should happen in a week or two. I'll let you know what's the scoop on that, believe me.

Balance and dizziness worry me a great deal, as falling is a constant concern. I'm very careful, because I have fallen several times in the past few years. Yikes! I know that is a big potential problem.

Brain fog and short term memory loss also scare me. When will that stabilize? Will I lose my mind? Seriously. Everything else kind of pales!

So there I am. A work in progress. I will get better!

I better write this down or I’ll forget it.


I don’t want to lose my mind and I don’t want to die or fade away into a shell of a person. I feel any of those options are possible. Probable even. And I won’t let that happen,


I can’t type or use the computer well, more signs I’m slipping. Have slipped.  I’ve been slipping for years. At least since I got my job at York Little Theatre. About a year into that, maybe two, I noticed I was slipping.  That was what? 2007 maybe? That long ago? I only know the year now by checking the computer, which I only thought to do after a couple of minutes. But I did think of it. The date is on the computer. Duh. I just have to concentrate really hard to know something I’ve actually known for 40 years. The date is right there.


It’s challenging to face this, but face it I will. Face it head on and stop it. Stop. It.


How?


Help. Nutrition and medical help and therapy and research. I know other people to through this. I’m not unique and I am not alone. Writing this will be my cure. Or a big part of it, anyway. Writing it down so I don’t forget it and so I get better.